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Old Thu Apr 16, 2015, 11:50 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi TASHMAC,

Is the PNH clone new? Having a small PNH clone is a positive sign that you have an immune attack going on that will likely respond to IST. Being an early responder is also a positive sign that you will respond to a second round of ATG.

From what I have read/heard, it seems like relapse is more frequent with people who had a rapid response to ATG. Perhaps it is because cyclosporine is discontinued too early while the bone marrow is still in a fragile state. The bad T-cells are still there, albeit in smaller numbers. If there is no cyclosporine to keep them at bay, and if the marrow is not back to normal cellularity yet, it seems plausible that the bad T-cells could eventually overpower the marrow again. That's my theory on why early responders relapse. Perhaps that is what happened in your case.

The million dollar question is once you start to relapse, does it make more sense to let it go and just knock everything out with ATG again, this time being smarter about tapering off of cyclosporine? Or is it better to try to stop the relapse with cyclosporine alone? I am starting to think a second round of ATG is the way to go, although I don't relish the thought. I wonder if attempting a cyclosporine rescue is just postponing the inevitable full blown relapse and potentially putting the patient more at risk because of kidney toxicity and increased cancer risk. Once your counts have fallen significantly, is it too little too late to really make a difference long term with cyclosporine alone?

I am interested to hear what your doctors think. They seem to be on top of things.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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